If the Soles of My Shoes Could Talk

Monday, March 5, 2018

(I'm not looking forward to the sixteen days of liquid but at least ice cream counts as a liquid!)

Every few years I get an upper endoscopy. I have a condition called
Achalasia (which basically means my esophagus does not swallow). My esophagus doesn’t
work properly to get the food I eat down and my sphincter to my stomach doesn’t
cooperate to let it in. My esophagus muscles are too weak and my sphincter
muscle is too strong. It’s annoying but something I have learned to live with.
I have to check on the condition of my esophagus every few years to check for
cancer and other abnormalities that can come as a result of this issue. I had
an endoscopy at the end of 2017, this time with a Botox injection to see if
that would help relax the sphincter. Everything in my esophagus came back “normal,”
but my Doctor’s exact words were, “Your esophagus looks terrible.” I wasn’t
surprised. Years ago, back in 2008, I had a surgery called a Heller Myotomy to help let food get into my stomach. That surgery was incomplete, so it didn’t
work. The surgeon didn’t quite cut far enough to help relax the sphincter. It’s
not a simple procedure in terms of knowing how far to cut. If you cut too much,
that is bad, and if you don’t cut enough, that is bad too. With the Heller Myotomy
they cut through your side and abdominal muscles, to cut the sphincter. It is
not a fun surgery. The recovery from that was long and pretty painful. Not something
I would want to do again.

In 2014, after moving
to an area where there are actually doctor’s who specialize in this, I was told
I would need another surgery. A new technology came out in a different country
in 2008 (right about the time I had my Heller Myotomy) called POEM (per oral
endoscopic myotomy). Instead of cutting through your side they go into your sphincter
via the inside of the esophagus. Pretty amazing advancement. From what I hear,
the surgery is less painful (3-4 days of pain) and only one night in the hospital
(verse a few). However, with my past experience and not wanting to be a guinea
pig since very few people had done the POEM procedure who also had a previous myotomy.
I decided to wait. I was coping just fine. The surgeon I had consulted told me
he really thought he could help me. He was surprised by how bad my swallowing
was. During a barium swallow test the tech told me it was the worst barium
swallow he had seen! They typically have you swallow and watch for a couple minutes
but they had to have me do two different barium tests, one where they waited
over 10 minutes to see if the stuff would go down, and it didn’t. I thanked the
surgeon and went on my way. I decided to go the route of expanding our family,
which 9 months later, included Eve. I figured I would take care of myself
later. I was managing things just fine.

Back to current
times. After meeting with the head of gastroenterology at Swedish and then
consulting with my thoracic surgeon who works with the gastroenterologist they
both made it pretty clear I shouldn’t wait any more. They told me if I waited
much longer I wouldn’t be a candidate for the POEM procedure and the next
option would be to remove the last few inches of my esophagus. All the years of
gradual change had stretched and ballooned out the lower part of my esophagus
that the Doctors aren’t sure if the POEM procedure will fix that but they are
optimistic (60-70% odds they gave me) that it will work. They are hoping my esophagus
will shrink down some on its own if it doesn’t have to work so hard against the
tight sphincter.

I knew my esophagus was stretched I just didn’t
realize how bad it had gotten. That’s the tricky thing with gradual change.
Maybe if I could go back in time and feel what it was like when I ate food 10
years ago it might be a no brainer that things have gotten way worse. But when
it’s a gradual change, you adapt, and it easily becomes the new normal. This
can be apparent in so many other avenues in life, not just with health.
Spiritual health is one that comes to mind. New believers are often very
passionate and on fire for the Lord, but as time goes on things can easily
creep in that divert your attention away. Maybe you used to spend an hour a day
in worship and prayer. Maybe you served more. And for whatever reason the time
spent in prayer gradually got shorter. The days spent serving others became less.
More life obligations crept in and became the new normal. Maybe you noticed at
first. Maybe you told yourself it was just a season. But as time passed it wasn’t
just a season, it was the new normal. A new normal your younger self wouldn’t
recognize. The good news is just as you slipped out of your old normal you can
work your way back in. It may be hard and even painful at times. It might feel unnatural
at first and can even seem overwhelming to bring yourself back on the path from which you
strayed. So, start small. You don’t have to change overnight. It took time to
get where you are at and it will take time to get you where you want to be. Don’t
go it alone. Surround yourself with others who may in your eyes, be where you
want to be spiritually. And pray.

I probably would not have gone the route of looking into
surgical options again if I was not surrounded by people who encouraged me to
seek treatment. People who knew what I was experiencing was not normal or even
close to what my normal used to be. I just couldn’t see it. My husband saw it.
The nights I am up in pain are becoming more frequent and longer lasting. These “episodes” as I call them, start with
minor pain, which usually leads to my being up all night, and ends with several
bouts of vomiting. I originally thought it was heartburn but soon realized this
was something different. The Doctors told me it is probably two things, food
rotting in my esophagus which makes it inflamed, and my esophagus going into spasm.
On the nights I have these episodes I am so miserable, usually for 24-48 hours.
During these moments I pray to God to take the pain away and vow to go to a Doctor
to see what can be done. Then the episode passes and I am back dealing with my “normal”
achalasia and I again think I can manage this. Which is why I am glad I am not
going through this alone. I have people to call me out on my stubbornness and
encourage change. It’s funny how many things I was trying to let get in the way
of doing this surgery, yet every time I tried, God seemed to keep directing me
to where I am at now. Deep down, I don’t want the surgery, but I also know I really
need to give it a try. As the date gets closer I am finding less and less
excuses to try and get me out of it and am accepting the change I have in store.
I have surrounded myself with experts in the field, I have a husband who will
see me through this, and two awesome girls to remind me the reason I am putting
myself through some pain and discomfort. I have faith that no matter the result
I will no longer be sitting still, letting my esophagus choose my life path. At
least I am taking back control. Yes, this is a subtle analogy to your spiritual
journey as well. Surround yourself with those who know God’s word, have a
support system, and have faith. So much can be accomplished if you bring it to
God in prayer. You don’t know what the future holds. I can guarantee you it won’t
be easy, but whichever path you choose, neither will be easy. That’s just life.

After my endoscopy
in November the Doctor prescribed me nitroglycerin (yes, the stuff they use to make
dynamite). I was so afraid to take it due to the side effects I read about
(mainly the nitro headache and chance of passing out). I was supposed to take
it when the esophageal pain started. I had one night where I had an episode but
I was too afraid to take it since Levi was on shift and I didn’t want to try it
alone for the first time. A few weeks later I had another episode. I waited and
waited and waited. Finally, around 4 am when I was about to start the vomiting
that happens with my episodes, I woke Levi and told him I was taking the nitro.
I had the pill sitting on my lap for over 20 minutes before I finally decided to
take it. I took it. Then immediately sprinted to the bathroom and vomited. Apparently,
it opened up my sphincter and everything came out. I think I had waited too
long to take it, when my symptoms were already too severe, but the good news is
I didn’t get a headache and I didn’t pass out. It was small but taking that
nitro pill for me was a little leap of faith.

(Little device to measure my ph)

Now I am at a
point where surgery is not something to put aside. My youngest is almost 2.5
years old. I think I’ve waited far longer than I should to take care of this. I
had one more endoscopy about a month ago where they did a Bravo study to
measure the PH in my esophagus over 48 hours. This would determine whether or
not I needed a fundoplication instead of just doing a straight POEM procedure. Basically,
if you are opening up the sphincter, you are increasing your chance of having
acid come back into the esophagus. If I was already having acid in my esophagus
my surgeon would recommend to have the fundoplication at the same time. My
results from my Bravo study showed that I had very minimal acid in my esophagus
(.3% of the time I believe) and that included some puking due to the Versed and
Fentanyl I was given to do the procedure. I don’t do well with opioids.

Now I’m just
waiting. My surgery is scheduled, it will happen this month. I have to be on a
liquid diet for 2 days prior and 14 days after surgery. Sixteen days in a row
of only consuming liquids. I’m not looking forward to the pain and the actual
surgery but I think I’m looking forward to the diet after even less. If you
have any great smoothie recipes, or liquid soups, I’m all ears. I know it is
not a guarantee that this will fix my problem, and there are risks with the
procedure, but sitting around and letting change gradually take me to a point
of no return with my esophagus seems far worse. So, here’s to not sliding into
a state of comfort and instead getting back to a new normal.

Wednesday, November 8, 2017

It’s been a long time since my last blog post, I have
two very cute reasons why that is the case. The past month felt exceptionally
long for me. It was a period of time where I am living as “the hunter’s widow.”
Basically, between hunting and work I think I saw Levi maybe four or five days
from the beginning of October-November 8th. He had training, then
shift work, followed by deer season, back on shift, back to hunt for deer, back
on shift, elk season, etc.

(Levi hunting)

You get the idea. When I thought about doing a blog
update with what’s going on, I stopped and thought, and really had no idea. I
can’t remember anything these days. Everything is a fog. Nothing seems worth
writing about, we just go through the same routine day in and out with outings
here and there but as a stay at home mom nothing seems that exciting for people
to read about. I mean at the end of the day, there’s this strange phenomenon
where I’m exhausted and yet if I were to put down on paper what I
“accomplished” for the day it looks like nothing. How is it I feel so busy
throughout the day and yet it doesn’t seem like I get much done? The kitchen
could still use some more cleaning, there are still little toys strewn about, I
still have laundry to fold, and wash, and fold…when was the last time I cleaned
the bathrooms? Washed the sheets? The list goes on and on.

And here is a
perfect example of why I am busy and tired at the end of the day when it looks
like nothing happened. Today the girls ran into my room at 7:30am. Eve comes to
my bed and asks to come up. I pick her up for a snuggle only to soon realize
her diaper had a major pee leak over the night and she is soaked, and now I am
damp. I take her and change her, then strip her bed and get to washing her
mattress protector, as that will be needed for nap later. After starting the
laundry, I make them oatmeal with blueberries and as an extra fun treat today,
sprinkles! The girls are itching to do some painting after breakfast. I clean
up the kitchen and happily set out some paper for them to “finger paint.” I say
“finger paint” because it soon turned into so much more than that. It started
on their fingers and for Lily became a whole-body painting experience. I tried
to stop her early on but she was too quick and once she was a mess I figured a
little more wouldn’t hurt so let her enjoy herself.Eve followed suit with painting her feet but
was relatively clean by comparison. When they finished it took somewhere
between 30 minutes to an hour to get everything cleaned and the kids bathed. I
went downstairs to continue cleaning the paint in the kitchen.

The girls were
playing together nicely upstairs while I finished cleaning. Eve took off her
diaper, put her potty seat on the big toilet, and went pee. I went upstairs to
help her wipe and reward her with two chocolate chips. Lily gets two as well
for being a good cheerleader. Eve screams, “I want to be naked!” I figure she’s
been doing a good job with going in the potty and since she just went she
shouldn’t have any accidents. Then the laundry chimes and I head downstairs to
switch it out. After switching the laundry, I head upstairs and go in Eve’s
room to put some things away. Suddenly Eve comes running out of Lily’s room and
stops and stares at me. I know that look. That is the look of a kid who had an
accident. “Did you have an accident?” I ask. She looks at me and runs away to
hide. I go into Lily’s room and gasp. She didn’t have a pee accident. She had a
huge poop accident. I grab some toilet paper to pick up the huge logs and call
Eve back to be wiped. Finally, I am able to convince her to come out of hiding
and get wiped. I head downstairs for the carpet cleaner vacuum (boy has that
been a useful purchase) and get to work. When that’s finished the kids are
telling me they are starving. I tell them to play a little bit while I empty
the vacuum.

While downstairs,
I go to the deep freeze, grab a frozen pizza, and start the oven. That’s going
to be lunch. Which gave me 18 minutes to get this written. I just heard the
oven beep. And that’s what’s been happening up until noon. So, it took over 4
hours of work to get the house looking like it did when we woke up. And that’s
why at the end of the day everything and nothing has been accomplished.

Tuesday, June 6, 2017

I wanted to give an update on how Levi’s recovery is going after his
mountain bike wreck a few weeks ago (see previous blogs here and here). Things
were a bit rough the first two weeks with good days followed by really bad
days. The first week he dealt with some paralysis of his digestive system
probably due to the impact of the wreck and a little with the pain meds (though
once he got home he really wasn’t taking anything heavier than Tylenol). Once
things got moving there he started having severe headaches. It was about 6 days
post wreck on a Friday, when he had his first. He was lying in bed in extreme
pain. He felt sick. He couldn’t eat. He couldn’t have even the slightest amount
of light or noise. He was in a lot of pain. The next few days the headache
subsided though it was still there, just not as severe. Then on Wednesday we
decided to venture out to Snoqualmie Falls as we thought a short easy walk would
be fine. His pain was getting better every day. After the Falls, we stopped at
a park and let the kids play. When we got home another extreme headache hit.
That’s when I began googling and got a little worried. I know you should never “google”
symptoms as you’ll get the worst-case scenario.

After reading that
people can have slight brain bleeds after injuries that don’t show up for about
a week I called my sister who is a nurse for her advice. She thought he may
have had a minor concussion from the wreck, or there could be a hematoma
pressing in his brain, or unlikely but still a small chance of a brain bleed. I
mean if he hit hard enough to lacerate his kidney, his head could’ve been
injured as well even though he didn’t hit it hard. She thought it would be best
to get him checked out since his head was never checked in the ER as he wasn’t
showing any signs then of a head injury. I called Levi’s coworker, Jason, who
was biking with him and spent time at the hospital after the wreck to see if
they ever checked his head for injury. I told Jason Levi’s symptoms and being a
trained first responder he also thought we should take him in to be seen. He
said it was probably nothing but with his symptoms there was a small chance it
could be something serious and he didn’t think we should mess around so long as
there was a chance. It’s an understatement to say Levi was not thrilled with
the idea of going in to the ER. He wanted to wait until morning but with this
headache he was clutching his head in pain and was not looking good. Behind the
scenes, Jason called a captain with the Puget Sound Fire Authority at the
station near our house and told him the situation. I also called the number on
Levi’s discharge instructions for Harborview to talk to the nurse there. I was
waiting to get a call back and was relaying information back and forth to
Jason. Jason told me to call 911 so the crew could be dispatched. He also
talked to Levi several times to make sure he would go in, even joking (though I
don’t think he was joking) that he knew all the right things to say to get him “invol’d”
(involuntarily brought in which involves police and soft restraints). Levi
obliged.

I got a call back from the nurse’s line at the same
time as I heard a knock on my door. I opened the door and saw the fire
department. Now that’s the quickest response time ever! I technically hadn’t
called yet. While I was on the phone the Captain told me to hang up so I could
call 911 and dispatch them. Then when he heard I was on the phone with Harborview
he told me to stay on the line with them so I could see where they wanted us to
take Levi and they would dispatch themselves. The nurse told me that they
typically want to see you back at the hospital you were treated at, however,
they also recommend going to the closest hospital. Harborview is great for
traumatic injuries but in this case the closest hospital seemed like the
quicker and more appropriate response so the Fire Fighters decided to take him
to Valley. They called their Aid car to transport him and asked him when he
wanted to go. He said he wanted to try to eat something as he knew he wouldn’t be
getting any food at the hospital. He ate a few bites of food that had been so
graciously made for us through a meal train started by people at Faith church
in Kent. He got into the Aid car and they took him to the hospital.

Jason called and told me he was going to the hospital
to stay with Levi and drive him home afterwords. Eve was sleeping and Lily was
supposed to be in bed, though the excitement of having the Fire Department at her
house was keeping her awake. She talks about how fun it was to have them over
at our house. I’m hoping we don’t have to have them over here anymore. No more
emergency visits. We can visit them at the station. We watched as the trucks
drove away then went inside to wait. About midnight Jason called to tell me
they did a CT scan and everything came back fine. He was having bad migraines.
We aren’t sure why he started getting them but so far, he’s been migraine free
for 11 days.

During this time, he also had a hard sneeze one day
and felt immediate pain in his lower abdomen and a bulge. He immediately
thought he had a hernia. He has had two inguinal hernias so knew what it felt
like. Since he was off work for his kidney recovery he wanted to get this
checked out as soon as possible so he wouldn’t have to take more time off work.
He opted to go to an urgent care center since his Doctor couldn’t see him for a
few weeks. At the urgent care, they diagnosed him with a hernia then scheduled
him for an ultrasound a couple days later. The radiologist called after the
ultra sound to say he didn’t have a hernia. It didn’t show up via imaging. Now
he was in a predicament. Should he wait and see if things resolved? Was it a
pulled muscle and not a hernia? What if he waited and it was a hernia and he
just delayed his recovery? He decided to set up an appointment with the surgeon
who did my hernia repair 5 weeks earlier for a second opinion.

After seeing him, the surgeon confirmed he had a
hernia and said that sometimes, especially if it’s early on, they don’t always
show up on imaging. When he was laying down for imaging Levi felt like it went
back in and that he didn’t bear down hard enough to make it bulge. The
technician told him he was bearing down plenty hard so he assumed it was
showing up on the imaging. He is now scheduled for hernia surgery tomorrow
(June 7th). Hopefully this will be the last surprise we get related
to his crash that keeps on giving.